FPIES stands for Food Protein Induced Enterocolitis Syndrome and our youngest son has it. This blog follows his story on this journey: our challenges, our triumphs, our adaptations as we navigate through this new world created by FPIES.

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Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Thursday, June 7, 2012

Anemia....again

Little man has been hovering over his spiral for a few weeks
now and helping him on our own has been just out of our grasp- right at our
fingertips but not enough for us to get a good hold on it.

This past weekend, he was really showing signs that his
anemia was back and his Gtube was really hurting him. So, by Sunday we
decided we needed to call in right away Monday morning and get him evaluated
further- for both anemia and Gtube issues (not that they are directly
related).

We call and leave messages with the GI and try to get in to
see if his Pediatrician on Monday. There are no appointments available
but he can see him on Wednesday morning and in the meantime, the GI ordered for
him to have an Gtube study (barium contrast upper GI) and some lab work to
assess his anemia. So, Tuesday afternoon was spent at these
appointments.

We got some of the results that evening, not
good.....Hemoglobin (normal is above 11) is back down to 8. Not good
(down from 12 a few months ago). It explains a lot though, and was what
I expected - as he has been tired and had disturbed sleep and now lately, his
lips are the color of his cheeks, which is not good because his cheeks are not
rosy.

We go to the Pediatrician appointment on Wednesday morning
and he assesses that yes, his skin/lips/etc are pale but his heart rate
is good and his activity level right then in the office was good.
So we decided that at this time, it was worth trying to see if the ProViMin
would help him catch up and replenish his stores. We scheduled a
follow up lab check for 2weeks and said we'd be in touch. The other good
thing about his appointment was that his weight is UP! For the first time
in months, his weight is UP! Alimentum RTF formula did nothing for his
weight and just a week on ProViMin and he's gained a pound a half! He is now
31#8oz. We all agree that we don't want to see him HAVE to get
another blood transfusion and would prefer to avoid IV iron infusions as well.
IV iron is infused with a sugar - dextrin....which comes from corn.
It doesn't go through his gut but his body still reacts to it- so we
would rather avoid it....if we can.

Later that afternoon, the rest of his labs came back-
another lab they checked was his Ferritin, which is the iron stores in his
blood- we needed to find out if his hemoglobin was dropping because of blood in
his stool/losses alone or if his stores were also affected because the last
time they were checked, they were already low. Now, they are very,very
low. We are going to have to intervene and not wait to see if the
ProViMin will restore his stores quickly enough.....realizing that his iron
stores are so low, we know we will need to do something more aggressive to help
him.

His GI called this morning and confirmed those are her
thoughts and recommendations, so now we are waiting for her to connect with the
Pediatrician and come up with a new plan (his plan yesterday before the
Ferritin levels were back were to do a wait-and-see approach (to which we
agreed to). But now realizing that his iron stores are so low, we know
we will need to do something more aggressive to help him.

The GI doctors also mentioned that she is really upset that
he is bottoming out again, that she doesn't understand why he didn't tolerate
the Alimentum RTF- or why he "seemed" to tolerate it for a few weeks
and then didn't. I clarified to her that I don't feel he ever did
tolerate it, we just wanted him to so badly so we kept pushing it -- and that
he CAN be stable if we didn't have to keep pushing foods that his body is not
ready to accept- full blown FPIES or not, he goes backwards faster if we push
him when he shows us signs that he isn't tolerating something- if we push him
just to get to vomit because that is the only evidenced based signs. IF
the ProViMin continues to work out, I don't want to push him - I want to just
take things slowly because he should be getting all he needs in the ProViMin
and if he needs gut rest or time to heal or a food that is not tolerated taken
out of his diet- then we need to listen to his body. Without a source of
complete nutrition, we have not had that luxury.

The GI starts talking about long term hospital admissions,
extensive tests and consults at other facilities with other more FPIES familiar
GI doctors....she admits she is frustrated and losing her patience and needs to
just know if his gut is use-able or not, or if he needs long term TPN to
thrive....

These thoughts overwhelm me and we ask all prayers that Sam
will tolerate the IV iron infusion and that his body will have the catch up it
needs and he can thrive on the ProViMin, and we can take things slower.

Oh, and the tube? Both the Ped and GI do not want to
discuss taking it out yet....even though surgery has said that is their
recommendation. One good thing is that it has stopped oozing and
draining and we noticed a significant correlation with the Alimentum feeds and
intolerance to the increase of the gtube drainage.

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Global FPIES Day

The FPIES Foundation

This blog is the sharing of our personal story of FPIES and the specific accounts, details and perspectives about how FPIES affects our Little Man. FPIES is a syndrome and can present with a spectrum of symptoms. A medical team familiar with FPIES can help with the specific needs from symptoms that present in your child. Information shared here does not represent the views of any organization I may work for or be associated with, and should not replace your own instincts or the advice of a doctor knowledgeable in FPIES.

What is FPIES?

In my own words...FPIES is a severe delayed food allergy of the gut, it is understood to be a T-cell mediated response, a Non-IgE Food Allergy in which food is considered a foreign invader and the body fights, or attacks it, until it can violently expel it; although the exact mechanisms are still not well understood.

Symptoms include: profound vomiting (often to bile), diarrhea and/or constipation. These symptoms can quickly lead to: lethargy, low body temperature, low blood pressure and in severe cases, sepsis-like shock. And still yet, many parents report children also experiencing many discomforting symptoms while the body fights this reaction and these can include: extreme stomach pains, excessive gas, runny stools with or without mucus/blood, acid reflux, rashes/eczema, sleep disturbance, and agitation/inconsolable crying.

FPIES is a clinical diagnosis (based on symptoms and history) there is currently no test for it.

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About Me

I am a mom of 4 boys. Our youngest has FPIES. I also work part-time as a Registered Dietetic Technician. Nutrition is my passion, my career, it now envelopes my entire life...
I am taking this one day at a time, putting together pieces of the puzzle for our Little Man's FPIES.
www.thefpiesfoundation.org